31 October, 2009

The right way to write a paper is to be sitting at a booth by myself in a fairly public place so I can't get up and start jumping up and down or walking around in circles, sitting sideways in the booth with my knees up and my computer in my lap and all my books on the table. If you were wondering. This is how it works.

30 October, 2009

I’m tempted to say “it was easy to be a martyr,” but that isn’t what I mean. It was very hard to be a martyr, but it was equally hard for everyone, because the qualities required to become a martyr were faith, bravery, and ability to bear pain--qualities that were just as likely to be present in a slave or a woman, if not more so, as in a high-status man. So it happened that many people who became martyrs, and therefore became celebrities in their communities and were held up as examples after their deaths, were people who would not normally be considered important in Roman society.

Once I had a root canal and I loved it because it didn't matter what my face looked like. I was considered a good patient because I was quiet and didn't cause any trouble by getting antsy or upset. I love getting shots because I'm good at that too. When I am feeling bad about myself, I wish I would get injured more frequently.

I haven't gotten a direct support job yet, although I've tried a few times. I think part of it is that I don't have experience working with people who are violent and I don't know how to explain that I know it will be easy for me. I don't know how to explain that I don't care if a person yells or tries to bite me. I wish all people were as easy to deal with as that--if people would just occasionally try to bite me, and that was it, my life would be swell.

I think I will have to edit my paper so it doesn't have the word I in it. I think they're harder on that stuff here than they are in America. But I really like those first two lines.

When I was fourteen, on a cold day when I felt full of noise and power and love, I went with my parents to a concert in New York City. It was vocal music, performed in a church, but that's all I remember. After the concert we briefly stopped at the Strand, and I bought the book Foundlings: Lesbian and Gay Historical Emotion Before Stonewall. I was a gay kid--normal people don't have to be gay when they're kids, I think, because the interbrain makes them so aware of the fact that it's stupid and dangerous to think about being gay. But I was gay, and liking girls was just like liking the Animorphs books, and werewolves, and Les Miserables. It didn't occur to me not to tell my parents, or to feel guilty that it bothered my mom, or to not buy books about it. And Foundlings looked like an interesting book.

So now it has been with me a third of my life, but I didn't understand it until I developed common sense at the age of sixteen. Or what I specifically didn't understand was this incredibly convoluted and prissy sentence, which is from a description of a scene in a lesbian pulp novel where the feminine Laura attacks her butch elevator operator girlfriend, Beebo, by telling her she'll never be a man:

By insisting on this terribly narrow story of gender inversion, by taking the elevators out of Beebo's sexuality, Laura returns them both to a brutal ground floor in which desire is always the desire for something real, instead of something living, and every demand is a demand for total validation, or for total destruction--in which there is no distinction between hatred and self-hatred.

"Whaaaaaaat?" I rightly replied as a middle-schooler. Elevators? Ground floors? Something real instead of something living? Frequently during my seven years with Foundlings, I have gone through phases where I've written this paragraph on the inside covers of notebooks so I can laugh whenever I look at it. Or not exactly laugh--marvel. I love rhetoric, even when it seems like it's just for the sake of itself, which is how this paragraph struck me for a long time.

But when I was in my late teens, I started loving inverts. Not because I am an invert, because there's no such thing as inverts anymore, at least in America.* Inversion was a way of making sense of same-sex attraction when being gay did not exist. If women always love men, and you're a woman and you don't, then that means that you have a man's soul. This means you're sort of freakish and tragic, but there's also calmness in it; you just have the wrong kind of soul, but your soul is acting right. If being same-sex-attracted is just a kind of disability, then it's possible to be noble about it. You can feel sad, blunder through all these crushes on straight girls, sometimes collapse under the weight of wanting so much not to be yourself--but you can be a good person, you can be brave.

I miss the medical model of homosexuality. Now that I have more common sense than I did when I was a kid, I'm painfully conscious of all the ways that being gay makes my life more difficult. But the model of homosexuality now is just--well, there isn't even one. You're not supposed to be upset about being gay unless your parents are beating you for it. You're supposed to act like it's this fantastic, jolly thing that makes you more unique, and if other people don't get that, fuck them.

Well, I don't feel that way. I feel impaired by my homosexuality. It's not the most important feeling in my life anymore, thank God, but neither is pride. I used to think that I was some kind of freak and that I just didn't like being gay because I was a maladjusted person, but I've started to think this isn't true. I think it's kind of like how I was the only gay kid at my summer camp. I tend to say things whether or not they're convenient, whether or not they make me feel better. I have watched a lot of gay people act like they don't like being gay; they just don't call it that. It's not part of their narrative like it is part of mine.

I like saying things are hard when they're hard.

I think taking the elevators out of me would be telling me that I must hate myself because I sometimes hate being gay. Or because I talk openly about that fact. Or because I'm interested in the writing of celibate gay Christians, and even identify with it more than the writing of mainstream gay people because they at least seem like they're striving for something instead of pretending that everything is good the way it is. Another way people take the elevators out of me is by telling me that I'm being negative when I try to manage my ASD impairments--for example, telling people before I speak that I'm not a good speaker. Or my parents telling me it's sad that I aspire to a direct support job with intellectually disabled people, which I want to do because it wouldn't make me nervous or tired. But I don't like being tired! How is it being all you can be if you're tired? I aspire to come home from work feeling happy and energetic, how is that not being all I can be?

I like inverts because they admit that things aren't going so well. And that doesn't mean they're always miserable, just because they admit that. I'm not always miserable--quite the contrary. I'm just straightforward.

*Some people would say that inverts exist--they are transgendered people. I don't think they're the same thing. I can see a trans person liking inverts for some of the same reasons I do, but I have never met a trans person who closely resembled an invert.

Jason Stackhouse: There's a reason things are the way they are.Bill Compton: Yeah. It's called injustice.

Terrible Hair Man, you win!

I think disability rights is interesting partly because we're still so much at a point where people try to pretend that oppressing disabled people is just the logical way to behave. As a gay person, I'm pretty used to people deciding that I either don't exist or am inherently awful as an excuse to do whatever they want. And it's the same in terms of being invisibly disabled. But no one can pretend that physically disabled people, and people with obvious intellectual disabilities and severe ASD, don't exist.

So what they have to do is just make up stories about what physically and intellectually disabled people are like. Really sad. Really bad at everything. Not worth the time or the money. Or maybe, they themselves think they're not worth the time or the money, so it's okay to not give them any. Way too many people try to pretend that it's somehow treating disabled people equally to not hire them or not give them services. And the way they set up disabled people as being worse at things is by utilizing a rubric where things non-disabled people are good at are incredibly important, and things disabled people are good at don't matter.

Ironically they used to do this to gay people too. THIS IS JUST THE WAY IT HAS TO BE! SORRY! I'M JUST BEING FAIR!

As you can see, now that a sort-of-famous (to me) person has commented on my blog, I'm incapable of writing a post that is interesting or well-put-together. But I'll get better again with time.

28 October, 2009

This is so so beautiful, I've been listening to it for the past hour and a half and it almost made me cry. Whenever I've read and listened to interviews with Ari Ne'eman (head of the Autistic Self-Advocacy Network, as I'm sure you know) I've had a tendency to be sort of judgmental and wonder "why is he saying that the way he is, why doesn't he explain it better." But the truth is, he is really forced into situations with the mainstream media where he has to deliver soundbites and is constantly defending himself against accusations that he doesn't have an ASD or doesn't have a significant ASD or thinks that kids with ASD should be allowed to hit their heads on walls.

This interview is with a radio show that is involved in mental health rights--not something I know much about, but it seems to tie into ASD rights in many respects. And the interviewer is just so decent and actually wants to listen to Ne'eman, with the result that he talks in depth about his experiences as a teenager in special ed where they were trying to train him to act normal. When he is actually given time and space to talk about that and make points about it, he does a really good job explaining some of the problems in the way ASD kids are "treated" a lot of the time.

He's talked about himself in interviews before, of course, but it's frequently been in a context where the interviewer is basically demanding that he justify himself--I'm fond of NPR, but the person who interviewed him there asked for an example of a recent incident that reminded him he is autistic. Why do they need to know that? Also, so much time in those interviews is taken up with him using the phrase "disability rights," and then the interviewer jumps on it like, "SO YOU ADMIT AUTISM IS A DISABILITY." Or if he doesn't use the phrase "disability rights," the interviewer says like they think he doesn't know, "Well autism is disabling! Kids hit their heads!! It's a disability! If you try to say it's not a disability then kids will just be allowed to hit their heads all the time!"

This interview is the first time I actually feel like I understand who Ne'eman is. And I feel bad that I have had such critical reactions to his interviews before--I mean, the things he has done are massive, and he's my age, and he went to a school where they tried to train him not to be interested in public policy. Well, they sure failed in that endeavor. This is amazing shit.

26 October, 2009

I feel like I should add a subtitle to this blog since it ended up being mostly about one subject. But any description of what that subject is would be difficult to produce.

I mean, most of what I write about is related to the fact that I have Asperger's. But "Asperger's blog" could mean some different things. And one of them would be a blog that was just about Asperger's in a void--an educational blog or a blog that offers advice on how to cope with Asperger's, like it's, I don't know, a peanut allergy or something.

Today someone linked to this post on the Asperger's LiveJournal community. It is about being successful in the workplace. Did you know that it's important to be well-liked in the workplace? And that your desk tells people what kind of person you are? And that if you're lucky, a regular person will tell you what clothes to wear so you can look normal?

Also, the worst part of having Asperger's is "not being able to work successfully," rather than social alienation. Cool! It's exciting to learn that I, and most of the other AS people I've met, are too stupid to identify what really bothers us about our lives. I'm so stupid that I've actually had jobs where my AS didn't cause me any problems, and expect to have more in the future. Someone should write a patronizing case study about me.

I know it's dumb for me to be annoyed by the post, because it's not aimed at me. I would not want to work in a place where it mattered if I wore makeup or kept my desk organized. For the record, I do both, but it doesn't matter because I look like this:

I have green hair because I have spiritual reactions to color. I draw and write on my pants because it is calming and when I look at them I'm reminded of things that make me happy (like "I love God," or "I love LV," or interesting thoughts I had, or song lyrics). I wear shoes and clothes that are soft because it's hard for me to concentrate when I wear things that are too tight or have a hard texture. I am happy with the way I present myself because it comes out of knowing who I am and what is important to me. I don't need a regular person to tell me that a lot of these things could keep me from getting certain jobs. But even if I didn't know that, it would be stupid to assume that I only look this way because I'm too impaired to know better, instead of because it means something to me.

The woman who wrote this post assumes that AS people have no particular attachment to the way they are and the things they like, and that it wouldn't stress them out or upset them to change those things. Actually, I think she is in the minority if completely changing her wardrobe didn't affect her mood or her ability to concentrate. I also think she's in the minority for not being offended that some random person told her to start wearing makeup!

I'm not afraid to say it: it is completely horrible and ridiculous that a person's work success depends on whether they wear makeup, or whether they water their plants, or whether they are well-liked. Sorry. Now you know. I think it's fucked up. I don't exactly go into office buildings protesting this--it's not the most important issue on my radar--but yeah, it stems from really shoddy ideas of what's important.

This post is called "Politics." What does this have to do with politics? Well, AS people are hurt by the idea that you need to look and act a certain way to be a good worker. So are intellectually disabled people, for that matter; they are frequently as capable as anyone else, but because they don't seem "professional," or because they are impaired in areas that most people aren't impaired in, other people perceive them as Too Difficult to Bother With. An example of what I mean about impairment is that if a non-disabled person gossips about everyone and is always late, that would be seen as more okay than an intellectually disabled or ASD person needing to be told something slowly, or needing to have something written down. Even if in the long run the non-disabled person causes more trouble and is less productive, the disabled person's problems will be seen as a bigger deal just because they're not "normal" problems to have.

The idea that people who are normal/"professional" are intrinsically better hurts a lot of people--not just people who are disabled, but people who are different for other reasons, some reasons that are considered political (like being an ethnic minority or being gay) and some reasons that aren't (like being nerdy or having bad grammar--the latter of which some people would identify as a class issue, and therefore political, but when you get down to it's hard to find any reason that isn't a little bit political).

Anyway, like I said I can't really do anything about this, and it is something that everyone in the world notices and complains about when they are 15 years old. And of course I frequently try to pass as normal in situations where it will make my life easier, and would be happy to advise any other invisibly disabled person who is trying to figure out ways to pass better. Passing is smart sometimes. That's the world we live in.

But I could never write a post about passing where I ignored the fact that it's totally fucked up, and I could never write a blog about Asperger's that was just about passing as if passing is a completely normal and innocent part of life. It's not. It is something we do because we live in a world that's a bad place. So while this blog is not political in a conventional way, I think it is always sort of political, because it is mostly about how to live in a society that doesn't value you, and how that affects you. I know that AS is a problem because people make it one.

25 October, 2009

One of my first posts was about this but the gaslighting post made me think about it more. Functional people cannot just yell when a noise makes them feel upset. They can't just say what they think and they can't just talk about their interests all the time. But at the same time, you don't want drones and you don't want incredibly submissive Asperger's people who don't self-advocate, and end up in abusive relationships, and so on.

What you want, I guess, is to raise your kid to be really aware. Not just of what's wrong with them, but what's wrong with everyone.

So you want a kid who thinks of himself as disabled both personally and politically. He knows he has impairments and thinks about how to manage them. But he is also aware of the disability rights movement, and he knows how many of his problems come from the medical model of disability. He knows that sometimes he can improve his situation by faking facial expressions, say, but he knows that it is unfair for the world to require that of him.

You want a kid who can recognize his own discomfort. You don't want your kid to start moaning in the supermarket but you also shouldn't reward your kid for keeping silent in the supermarket because then you end up with a kid who just doesn't express feelings that still exist. You talk to your kid about what's going on. You ask the kid to try to be quiet and you tell the kid that if it gets too bad, or if he thinks he's going to start yelling, to tell you so you can take him outside. Then when he's older, he will be able to understand himself and take himself outside when you're not there.

You want a kid who is anti-meanness and judges his and other people's meanness the same way. He tries to figure out if people are interested in what he's saying, because it is mean to make someone listen to something they're not interested in. He is very conscious that other people might be in pain and he has learned the appropriate reactions, because it's mean not to help someone who's in pain. If someone hurts him with ignorance or laziness, he knows that's just as mean as if he hurt them the same way. If someone bullies him, he knows that's them being mean, he knows that's not his fault for being different. He just sees meanness; he doesn't see normal and not normal. He doesn't feel that he is trying to be normal and they are cracking down on him when he doesn't succeed. He knows that he is trying to be kind, and other people don't always try as hard as he does, and that's wrong.

This is all I can think of so far, but you get the idea hopefully--clearheaded awareness of self and others and social norms, not privileging any of those things over the others.

Gaslighting is when you try to keep a person from standing up for herself by making her doubt her own perception of things. The term comes from a 1938 play in which a guy lives below the apartment of a woman he murdered for her jewels. Every night, he goes into her apartment to look for the jewels, causing the lights in his own apartment to dim. His wife notices this, and wonders where he goes every night, but the guy tells her that she's just imagining the lights dimming, and that it's weird for her to ask him where he's going. He almost succeeds in convincing her that she's mentally ill. Not all gaslighting is so calculated, of course; for example, Don gaslighted Betty on Mad Men when he wouldn't admit to cheating on her. He wasn't intending to psychologically torture her, but he did take advantage of her internalized sexism and history of emotional problems in the hopes that she wouldn't make him face up to something she knew he'd done.

I used female pronouns in my definition because it makes grammar easier, and also because gaslighting is easier to do to a woman. Women apologize more, are more self-deprecating, try harder to adjust ourselves to other people's needs. As a result, it is easier to convince a woman that her perception of something is wrong.

Gaslighting is a confusing phenomenon because it's hard to think about how to prevent it. I don't really want to live in a world where everyone assumes they're right all the time. The world is too much like that already. But as things are, the people who are confident that their perceptions are the right ones have such an easy time manipulating people who don't. That isn't good.

I guess the solution to gaslighting is to teach confidence to open-minded people. Being self-deprecating and willing to suspend disbelief are good qualities but we live in a world where they're turned into weaknesses. I guess we have to find some kind of middle ground where people are open to the idea that they're wrong, but also aware that someone might be fucking with them.

Obviously, I'm bringing up the issue of gaslighting because it is such a big issue for me, and I think developmentally disabled people in general. In ABA schools, they mark kids down for "non-compliance," even if non-compliance consists of a kid wanting to stim, or being too tired to do work, or arguing with a teacher's idea of the "right" way to say something. People in workshop and group home settings spend their whole life being told not to complain, to be quiet, to be pleasant. And this does create a lot of nice people, but it also means that, for example, developmentally disabled people often don't speak up if they are sexually abused. And for ASD people, I think it can lead to meltdowns because we are encouraged not to express discomfort so we hold it in as long as we can.

I mentioned in a previous post that pretty much every time I've had something medically wrong with me, it's taken a while to be diagnosed because the symptom has been pain and I've been trained since I was a kid not to express pain. When I was a kid, getting my hair brushed, washed, blow-dried, or cut caused me incredible discomfort and I would cry and yell and complain, but I was always told that I was overreacting and it wasn't really that bad. So I figured it wasn't. So when I had appendicitis I figured it wasn't really that bad. And so on.

This is interesting because in terms of the appendicitis I was, on the surface, gaslighting myself. And also, the reason I wanted to write this post is because someone posted in a disability LiveJournal community about how their mom said they were "eating oatmeal over and over" and they wanted to know if they were actually eating an abnormal amount of oatmeal. A community member, presumably visibly disabled, commented asking what this had to do with disability and why the person didn't make their own decisions, since they were an adult. Well, the reason I perceived the post as disability-related, and I assume the reason the OP chose to post it in that community, is that the OP has an ASD. For a person with ASD, "over and over" can be a trigger that makes the person think, "Shit! I'm doing something that is a symptom of ASD and therefore is wrong! I better change what I'm doing to something normal!" I identified with this a lot because when my mom tells me I'm doing something "obsessive" or I'm "cycling," I react with quite a bit of anger and shame, a lot more than an ordinary person would if their mom told them the same thing. And then in the future I feel bad about doing the thing my mom said was "obsessive."

So here I'm also gaslighting myself, right? As is the poster. It's just an innocent comment about oatmeal, right?

Even if it's not, even if their mom is intentionally trying to fuck with them because she knows how they'll react as a person with ASD--well, you can't really tell the difference, can you? If some person tells me I'm eating oatmeal over and over, and they aren't thinking about my history at all, I'm just gaslighting myself when this makes me feel sort of embarrassed and apologetic and forced into submission because I'm an Abnormal Person and as a Normal Person they know what I should be doing. It's my fault, sort of.

But it's only sort of my fault, because it's privilege. Privilege is invisible but everyone keeps it going, conscious or not. And it's usually only the people who are negatively affected who have to be conscious. The other people can be like, "Hey man, what are you freaking out about?" Which, in this case, ironically amounts to gaslighting about gaslighting.

21 October, 2009

Wikipedia says that 1-2 in 1000 people have Kanner autism, and 6 in 1000 people have ASD. I'll assume for the purposes of my Sad Math Exercise that people with Kanner autism don't have the same level of language that I do. This obviously isn't true for all classically autistic people by the time they're adults--not by a long shot--but given that some of the non-Kanner ASD 4-5 in 1000 might have PDD-NOS and not have good language, I will just go ahead and estimate that 4 in 1000 people are ASD people with good language. I only want to have relationships with people who I can communicate with using words.

I only want to have relationships with women. ASD people are four times as likely to be male so that means 1 in 1000 people is a woman with ASD and good language ability.

I am a woman myself, so I must have relationships with people who are same-sex-attracted. According to Wikipedia, 5% of American women had "frequent or ongoing homosexual experiences" according to a survey done in 1993. This isn't really an accurate way to figure out how many women are SSA, because some SSA people don't have any frequent or ongoing sexual experiences at all, but for the purposes of my Sad Math Exercise I will pretend that the number of straight girls who do things with other girls for attention is equal to the number of SSA girls who don't do anything at all, and say that 5% of American women are SSA. 5% of 1 is .05 so .05 in 1000 people--.005%-- is an ASD woman with good language ability who is attracted to women.

If you add G-23 Paxilon Hydrochlorate to a planet's air processors, 99.9% of the people die of lethargy and .1% turn into Reavers. If I go to to a planet where there are 20,000 people and Pax has been added to the air processors, there will be one person I could have a relationship with, and 20 Reavers.

20 October, 2009

Niyatee asked me another question. I like how I'm setting her up as this strawnormalperson, who exists to ask me questions so I can shed light on things in an interesting manner, like I'm a classical philosopher. For the record, she is much smarter than I am. And the reason she was asking me questions is that she's a neurology student and she works with people who have PTSD, and I think she was thinking about whether stimming is similar to the thought processes of non-stimmers who are under stress, whether it's a physical manifestation of something other people do invisibly. But for some reason, we/I got off track enough that I ended up telling her about this time when my friend told me about something really awful that had happened to her.

My immediate reaction was of a piece with my standard social interaction persona, which is, as I might have mentioned, a poor imitation of a Manic Pixie Dream Girl. My voice is kind of soft and little-girl-ish, I am solicitous to the point of sometimes going too far, I interject, I tease. Not that I teased my friend when she told me what had happened, but I reacted the way my MPDG persona would react. I said, "Oh no! That's terrible! I'm so sorry!" in this breathy little voice. But then I thought: what the fuck am I doing? What she just told me is heartbreaking and infuriating; she deserves more than a shitty, cutesy performance of sympathy. So as she continued to tell me about her experience, I went and sat next to her at the table where she was sitting, and I looked at my hands, and I spoke the way God intended--in soft gray lines.

When I said this, Niyatee said some disclaimers about this being a personal question and she wouldn't be judgmental--but how do I actually feel when a person's in pain? Really. Because I had been saying, I guess normal people sense what other people are feeling, and feel what they feel, right? Is that how it is? Implying that I don't sense what other people are feeling. But when she asked me how I feel when someone's in pain, I felt myself starting to respond, "Oh no! That's terrible!"

Which isn't a feeling. And I just said it's an act.

What do I feel, actually? Maybe I feel interested. When I was a kid, I got bullied a lot and other kids didn't seem to respond to my expressions of pain, and they didn't seem to respond to logic. So I kind of believed other people didn't have an inner life. Even now, before I get to know people I tend to have a sense that they're different from me, inside. I can only be attracted to girls after I've seen them in a visible bad mood; I need physical evidence that they have feelings too. My immediate reaction to someone telling me that they're depressed or upset is that I feel closer to them, and more interested in them, maybe. Does that make me a bad person? I'm not really sure.

But I'm a behaviorist, maybe, when it comes to myself--I tend to think it doesn't matter what I feel. I might as well feel "Oh no! That's terrible!" Does it matter how I feel if I respond correctly? Not that I respond that well. My MPDG persona is a mess, I know I act like a silly little kid, but I couldn't talk in class or make friends without it. I need someone to be. "Be yourself" is the stupidest thing you could say to me, because I don't really remember who I am, and if I do find out, it won't matter, because who I am is not someone who can function in the outside world.

Something I know is that I'm not really a girl. I'm not saying I'm repressing transgenderism, because I don't think I really have a gender identity on a deep level like most people do. But when I was a kid, I definitely remember that my brain felt like a boy's brain. There was just something about it. When I read about how men and women don't get along with each other, I always thought the man's point of view made sense. I remember being scared someone would find out--that when I woke up in the morning, when I thought the word "me," when I wrote, the first image that came was always, I'm a man. There was something wrong with me.

But when I grew up in my mid-to-late teens, and started trying to work out ways to be functional, the idea of being male (and the fact that I thought of myself as maybe trans, and read about transmen, and wanted to look like a boy) was something I just didn't have room for anymore. I didn't have the spoons to transition, that was for sure. And besides, the MPDG box was the only one I could even halfway fit, and like the name says, it's a girl's box. And I wouldn't pass, anyway. I'm sure not tough enough. So now I'm a girl. Okay. Who the hell cares what I feel?

See, I am definitely not a classical philosopher because I'm not shedding very much light. I'm out to prove I've got nothing to prove, like Napoleon Dynamite. And what can I demand from the world that would make this stuff any different? What would the world have had to be like for me to not have had to learn all these fake reactions? And besides, it really is an innate good for me to notice when someone burns their hand on the stove and how to help them. Can I separate that from the emotional performance that I learned as part of that reaction? Also, I know that I have to batter my way discreetly through tiredness and executive dysfunction and shoes that are too tight and questions I don't understand, and can I really separate that from the injuries and illnesses that have either gone untreated or been diagnosed quite a while after they first appeared, because I didn't make enough of a fuss?

I feel really fucking sorry for myself, I know. But I just feel like I'm not really anyone, and that gets to me from time to time.

Things are still rough but since I've really accepted that and hit the bottom, I've at least been doing some writing and recording music. Which is the only good thing that ever comes out of things being rough. So I figured I should write a blog post, too. I thought I would write about behaviorism and spoon theory.

This summer I interned at a school that uses Applied Behavior Analysis to treat kids with autism. It was a strange experience. If I didn't have an ASD, I'm sure I would have immediately begun daydreaming about working there someday. Most of the instructors are young women with BAs in various subjects, small liberal arts college kind of people, the culture I'm from. It's much more fun and informal than an ordinary school; you're expected to hug and tickle the kids and call them "buddy;" you go on trips to the swimming pool, on the subway; you set up obstacle courses where they can practice social skills. And it's in the city. Being homesick, especially, I've started to think "screw being realistic, I just want to live in Manhattan."

The thing is I could never work at this school because they don't understand spoon theory. I mean, of course they don't, they're behaviorists.

Behaviorism means you only think about what people are doing, not what they're feeling or why they're feeling the way they are. In a lot of ways this is good. Behavior modification is by far the most effective way to treat severe autism, which makes sense because autism and the motivations of autistic people aren't always easy for normal people to understand. And also, I think, if you keep dwelling on Oh No What A Confusing Disability This Person Has, that doesn't really help the person. Teaching the person to do specific things is good both because skills are good, and because getting skills and understanding rules is good for a person. The instructors at the school where I interned had a really refreshing attitude: they hugged the kids, they talked to the kids and each other about how funny, cool, interesting, and nice the kids were, and they expected the kids to improve.

My parents tried to convince me not to go to college right out of high school. They thought I wasn't ready. I like my parents a lot, but my whole life, they have consistently underestimated my skills, and then used my lethargy and behavioral problems resulting from their attitudes to "prove" that I'm not ready for things. (This is why I'm completely dishonest when I talk to them about how things are in the UK--they would overreact, and probably use my current bad experiences as ammunition against me for years to come.) At eighteen, I knew this about my parents and I knew how it affected me. I knew how different, how much happier and more competent I was at summer camp; and even when I wasn't happy or competent, at least I could forget about it by stimming or reading or writing, instead of having my problems amplified by my parents' reactions.

So I insisted on going to college. It was the best decision I've ever made. I went to a big, anonymous place where no one expected me to fail, and I'm not saying I did as well as a normal person, but I didn't fail, and that experience has changed me and continues to change me. I think this could be considered an example of behaviorism, maybe. I knew that action needed to be taken, that physical things needed to happen, for me to improve. Not focusing on how things seemed, but what I did, in a quantifiable sense.

Which is what behaviorism is, right?

But sometimes, behaviorism isn't enough. Especially with kids. Which is where Spoon Theory comes in. Spoon Theory is an analogy created by a woman with lupus to explain what it feels like to have lupus, but people with other invisible physical disabilities have also begun using it, and I think it can also be applied to ASD. When you do Spoon Theory, you imagine that you have a certain number of spoons that you get every day, and it takes a spoon to get dressed, and a spoon to wash your hair, and a spoon to walk to the car, and if you run out of spoons you're really screwed, or maybe you can borrow some of your spoons for tomorrow, but then you're really screwed for tomorrow. The idea is that a person with lupus (or CSF, or ASD) has to think a lot about what they're going to do, and manage their time wisely, because everything is harder and takes more energy. You can't just mess around trying whatever you want. And you have to recharge.

The problem with the school where I interned, I thought, is that they were such behaviorists that they only thought about what the kids should be doing, and never ever about what they were feeling. They didn't seem to think about stress, about how hard those kids were working, and how sounds and textures and those ever-present hugs could really wear on a person with ASD. I think autistic kids who whine and yell and hurt other people or themselves are generally kids who don't have any spoons left and need a break. I think stimming can be part of a good break. But at the school, stimming and yelling and crying and throwing yourself on the floor were just "bad behaviors." Or "non-compliance." But there's no humanity in looking at a child that way! They didn't treat the kids as OMG Poor Disabled Kids, which was good, but I felt like they often just ignored that these were kids with really different brains. They would talk as if the kids were stimming for attention, that the kids were trying to be manipulative when they cried or complained. AUTISTIC PEOPLE ARE NOT GOOD MANIPULATORS. PEOPLE WITH SENSORY TROUBLES HAVE A LOT TO COMPLAIN ABOUT.

When I was in middle school, I would come home from school and get on the Internet. Which would result in my mom descending on me and telling me how "addictive" my behavior was and how I should instead come home and start doing my homework right away. But school was exhausting. It was crowded and loud and people hurt me and it was hard to understand what to do. The Internet was always easy and fun. I wanted the same, simple, good thing to be waiting every day when I came home, so I could make it through the day. Or you could say: when I came home I was out of spoons. But my mom just saw it as bad behavior.

I could never work at the ABA school in New York, not only because I'm offended by their attitudes, but because I had to sleep and stim so much to get myself able to go there, because I knew that it wouldn't be acceptable for me to curl up in my chair or rock or flap my hands or take my shoes off, because it would be considered bad behavior. Or the adult version of bad behavior which would mean unprofessional or maybe taking drugs, I don't know, because they didn't know spoon theory and they wouldn't have room for the idea that people do this for a reason.

I guess I don't have a super succinct conclusion to come to about the intersection of behaviorism and spoon theory. I think that a positive attitude that focuses on quantifiable achievements is really important for helping ASD people. But I think that professionals and parents have to try to understand how we're feeling, too, and when they're working with someone who can't communicate easily, they must not assume that "bad behavior" means laziness or meanness or inability to do the work. Sometimes it just means not having enough spoons.

15 October, 2009

I was glad when Mercedes got to sing. And Sue is always wonderful, of course. But they had a lot of nerve with the whole minorities storyline. Whatever. The show is just barely entertaining enough to keep watching, but it's not worth writing about. I guess it must have become slightly less offensive to get to that point. They didn't say Mongoloid or talk about how deaf people suck at everything. Hooray.

I've been going through kind of a rough time. Yesterday I felt pretty close to having a meltdown in public, and had some violent thoughts. It can only go up from here, I guess. I need to feel more on track in terms of academics, but the fact that I'm not on track yet shouldn't keep me from doing writing and music--because as it is, I haven't really been doing anything. I did this yesterday, though:

13 October, 2009

I'm working on a post looking at Mad Men through the lens of ASD--specifically, difficulty reading people, and pulling off social interactions in a convincing manner. I read a really good post talking about Pete and Peggy's relationship as it relates to BDSM, and that just made me want to write this post more--I mean, there's so much in this show, and especially in Peggy and Pete, that it doesn't make sense to just avoid topics that aren't "period" or are related to "special interests." I was trying to convince my friend to watch Mad Men and I made her watch the hunting scene, because I feel like it's a perfect example of how the show is not period. Pete is a person of his time, but he's also way too weird to be summed up by his time.

And Peggy...oh, man. I consider myself a feminist, but every time I hear something about "women" a part of me shuts down. People use the word "women" as a code for all these things--attracted to men, mostly spends time with other women, socially sensitive, emotional in a particular way. None of these things apply to me. People use the word "women" as a code word when they are talking about abortion and birth control, which are things I support, but which are not things that personally affect me. I'm not against the people the word "women" stands for, but I don't feel particularly attached to them either.

What I'm trying to say is that I would never expect the character I identify with most to be a female character, especially if she's a character who is seen as representing something about feminism or "women's issues." But I love Peggy, so much. She doesn't do any of the things "convincing female characters" are supposed to do. She doesn't have a sense of fashion; she wears awful cardigans. She likes whiny, scrawny Pete, who is the textbook example of what guys are told not to look and act like if they want women to be into them. She is really socially awkward and always brings things up at the worst possible time. She doesn't get along with other women very well; frequently they're baffled by her, and make up dumb excuses for why she acts the way she does, so they can try to force her into their idea of what women are like.

I'm not really going anywhere with this, except that I love Peggy, and that I will be expressing my love for her more in the future.

12 October, 2009

Today I walked five and a half miles. Exciting! And I went to the local group for people with Asperger's. I'm not sure what I thought about it. Most of the people were a lot older than me and were men (they might have all been men; there were two women but I think they both might have been support people). It's an advocacy group rather than a support group, which is actually a cool thing. It was interesting to be around other people with ASDs but I didn't feel a magical connection with the other people or anything. Not even as much as I felt with some of the ASD kids I worked with this summer.

Several of the people had some trouble expressing themselves verbally so I feel like I didn't get a whole impression of what they were like. There was one guy, who looked to be the youngest person there except me, who was trying to say things that I thought were interesting, but seemed to be having trouble getting them out. I feel like this wasn't the best environment to get an impression of what everyone is really like, and maybe after future meetings I will get a better impression of them.

A few of the guys in the group have started a blog about being discriminated against for having AS. It was funny because one of the women got all anxious and said she thought people would find the blog and bully or stalk them, or something. I said that I have a blog and make YouTube videos about having AS, and I've never felt in danger of harassment, but I don't think I was very firm about it because I didn't know a polite way to say, "People who didn't grow up with the Internet have ridiculous ideas about how dangerous the Internet is."

In other news, this morning's episode of Mad Men broke my heart all day, but I'm too tired to write more about it now.

11 October, 2009

I have to write about the Metropolitan Community Church. Or not all of them, I don't know what they're all like, but I have gone to the Edinburgh one twice and it's by far my best experience going to church. I hate church. Or, to be accurate, I feel about church the way I feel about girls; I think about going to church all the time, but it's something I'm really anxious about because I don't have much experience, so every time I get close to going to church, I usually break down and don't go. Or if I go once, I can't make myself go again.

Well, MCC Edinburgh is the only church I have ever gone to twice. The people are friendly but not in the way they have been at other churches I've gone to, where there are just a lot of people talking to you and making you feel nervous. People just smile and look kind. After the service there was soup, and I almost left because I was nervous about socializing, but I made myself come back when I was almost out the door because I knew that it would be okay. And it was okay, I talked to some people some, and then I just listened to the conversations of the people around me.

According to Wikipedia, MCC is particularly focused at reaching out to gay, bisexual, and trans people, but what I really like is that it doesn't stop there. They have open communion and the communion is gluten- and alcohol-free in case someone has trouble with one of those things. And there's just the thing I can't name, the thing that makes me feel comfortable in a church for the first time. Last time I went there was a toddler playing with blocks and making noise during the service. It feels like there's no bad behavior there.

The sermon was about how it's okay to tell God you are confused, upset, or doubtful. The pastor said that no one ever make hymns out of Psalms of Lamentation, and that is wrong because it makes people feel like God will be mad at them if they don't have positive feelings all the time. I don't remember the whole sermon because it was really long, but it was really good and by the end a few people were crying. It was so wonderful to feel whole and safe, and I am always spacing out all the time, no matter where I am or what I'm doing, but almost the whole service I was right there.

We had to write our own Psalms of Lamentation. Mine goes:

Why does everyone have to think it's stupid to believe in you & make me feel like I'm stupid and crazy for believing?

07 October, 2009

It is hard to plan a post about this because I keep wanting to tie it in with how much I love Mad Men. But I feel like that would cause a messy, incoherent piece of writing. To keep it simple, in this post I attempt to explain why Asperger's is diagnosed so much less in women, and why many AS-identified people don't display AS symptoms that much.

The diagnostic criteria for Asperger's assumes that the person being assessed feels entitled. Just because you like monologuing, and have trouble understanding the difference between monologuing and a conversation, doesn't mean that you will monologue if something painful happens every time you try to do it. Just because you love flapping your hands and jumping up and down doesn't mean you will do it, if every time you do it your parents scream at you to stop. The diagnostic criteria for Asperger's assumes that you are seeing a person who has not received a punishment for ASD behaviors. Because when people are punished for things, they stop doing them.

Oh, but people with Asperger's are so dense, and they can't tell that other people don't like their stimming and monologuing, so they wouldn't actually stop doing it! Yeah, okay--dense doesn't mean impenetrable. If other people just looked away and stopped talking to you after a while, maybe you wouldn't catch on. If people started crying, or yelling things at you out their car windows, then maybe you would.

I am very very concerned, all the time, with figuring out what people are feeling and what they will feel in the future. If I appear perceptive, it's not because I get the kind of immediate feedback that normal people get; it's because I'm working hard. I am very concerned, all the time, with what I am saying, and although I don't monologue, I often state things very briefly, or don't explain them enough, specifically because I am trying not to monologue.

This is partly because I'm a girl and I can't just run off at the mouth all the time like I could if I was a guy. If I was a guy, there would be a little more space for someone like me. Maybe too much space. What I was going to say about Mad Men is that Pete Campbell is Asperger's plus way too much space, so much space that he can do something evil and not even notice. Because he doesn't sense people's feelings, he assumes they don't exist, or he projects onto them what he wants them to feel.

This post is already a mess. The subject upsets me, because it reminds me of why I don't get along with my dad. My mom and I both think my dad has AS. My dad says he isn't sure he has it because he always gets an NT score on Internet Asperger's quizzes--yeah, well, those are based on self-reporting and my dad is completely unaware of the way he acts. He monologues all over people! If you interrupt him when he's monologuing, he just keeps on talking straight through you, even if you interrupted him to tell him you already know the end. If you tell my dad you don't like something he does, for example that you don't like for him to tell other people you're gay, he just tells you why he thinks you're wrong to feel like that.

And he doesn't care. He doesn't have to feel bad all the time about the stuff he does wrong, because people let him do it. And he didn't grow up his whole life being told that he was--well, wrong; with all this crying and all these books about different conditions left lying around the house, and all these doctors. I was a kid who always felt like a burden, and now I try really hard not to be one. And my dad doesn't notice or care if he's a burden or not.

The way I feel about my dad is ridiculous, because he's such a great person. I know that if I look at him out of context, he is one of the kindest and most interesting people I know, and he was a wonderful father to me when I was a kid. He wasn't the person who was doing all the crying; whenever my mom says how difficult I was to raise, and how much better I am now, he always disagrees and says how fun and interesting I was as a kid. I know that he feels like I'm worse now, that he thinks I'm mean to him, that I pick at him for no reason. And I do pick at him a lot. It's just hard to be around him because I feel like he's had it so easy.

06 October, 2009

I realized I don't even know why I still have this post up so I decided to delete it. It's like 3 1/2 years old and...I'm not really sure why I was so critical of Emmy the Great in the first place? I think it's really easy to criticize a musician or other pop culture figure for stuff that you do yourself and I think every quote of hers that I thought was pretentious was something my friends or I would say.

Also, about a year after I first made it Emmy the Great contacted me to tell me her thoughts about religion and she was much nicer than I deserved given how needlessly critical of her my post was.

This is a song of hers that I think is wonderful (one of many):

The original thrust of this post was that "Easter Parade" by Emmy the Great is inferior to "Failure" by Laura Marling as a song about not being religious. The first song (IIRC) is just about someone watching her family celebrate Easter and thinking that they're wrong and I felt that the song had no point aside from just expressing a controversial thought. The second song is a more complex, playful exploration of someone losing her faith.

I still feel the same way about the two songs but I'm not sure why I wrote such a screed or felt so aggressive toward the first song, maybe I was more insecure about being Christian than I am now. Anyway I'm sorry. I don't know anything more about Laura Marling or Emmy the Great than anyone else who can read the Internet; I don't know anything about Laura Marling as a person; and all I know about Emmy the Great is that she's an unusually open and forgiving person.

"It is a tale/Told by an idiot, full of sound and fury/Signifying nothing."

Even if you haven't read The Sound and the Fury, you probably know it is named after a line from a Shakespeare play. But if you haven't read the book, you might not know that one of the protagonists is a literal "idiot"--that is, a severely developmentally disabled person who expresses himself with loud, wordless moans.

I'm not sure Faulker thought about the title of his book, beyond thinking it was a clever literary reference. Because it doesn't really fit where you would expect it to. It's clear upon close reading that Benjy's wails and rages don't actually "signify nothing"--they make at least as much sense as any other Compson's behavior, if not more. Benjy lost his beloved sister, one of the only people who was kind to him. Her name is a very common word, and whenever he hears that word, he gets upset. It is popular to explain this by saying "Benjy has no sense of time, and doesn't understand she is gone"--but in fact, if he didn't understand she was gone, he wouldn't moan when he heard her name. It is very easy to understand why Benjy acts the way he does, and anyone who would describe his behavior as senseless is simply too lazy to engage with him. Instead of claiming that he doesn't understand time, it would be more accurate to say that Benjy feels the events of the past very keenly and hasn't gotten over them. This is true of most of the characters, disabled and non-disabled.

When ableist people try to argue that ASD rights advocates are worlds away from "real autistic people," they invariably invoke people like Benjy--archetypes of violent, nonsensical children and adults. This is supposed to make high-functioning ASD people see low-functioning people as the Other. We're supposed to feel guilty and disgusted, and rush to separate ourselves from them.

But the truth is, violence is a perfectly understandable reaction when you are in pain and don't know what to do. I was a violent kid, in large part because I hadn't learned to cope with my ASD. If I had been more severely affected, I imagine my pain would have been worse, and I would have had more trouble figuring out how to cope. So I imagine I would have been more violent, and violent for longer. I would have needed more help. Hopefully the people around me would have understood what kind of help.

Because I understand where developmentally disabled violence comes from, the fact that someone is violent doesn't make me think they're an "idiot," baffling, irrevocably different from me. Benjy's sound and fury signified that he was in pain.

I went into a store thinking of buying a sandwich. The previous customer left, and the woman at the counter looked at me. I said "Sorry," indicating that I hadn't yet decided what kind of sandwich I wanted, and had to spend more time reading the menu on the wall. She said, "That's all right, I'm here until half-past four." (It was 9:30.) After I looked a while longer she said, "We have everything here if you want to look at it--it's a bit confusing to look at everything in black and white. We have small and large rolls." Then I said what kind of roll I would like, and had already thought enough to be able to keep up with her questions about what kinds of things I would like on the sandwich.

Later, I was activating my debit card on the Royal Bank of Scotland website. After I had entered my activation code, I was asked to enter a password and a PIN number. Under that was an item designated as being "for customers with special needs." It gave me the option of choosing not to have forms time out, in case it took me an unusually long time to finish them.

Taking a longer time to do things is not that big a deal unless people make it one.

05 October, 2009

I'm not very happy right now. The college I go to in the US is in a small town and most of the buildings are really close together. I also don't have to cook for myself and can pretty much wander around in pajamas if I want. Here, studying abroad in the UK, I have to walk at least two and a half miles a day, which isn't really very much and I should buck up, I guess, but by the end of the day I feel really tired out. Deciding what to eat every day is also kind of overwhelming. I didn't get put in a seminar group for my art history class, and I've probably left this issue way too long because I had to walk half a mile just to see the lists of seminar groups, and then I had to walk home to check my email from some irritated university employee telling me what I should do about it, and the email said I should "ask at the office" (at the same place as the lists), and then I went back today and needed to ask a lot of people just to find the office, and then the office was closed for the day anyway so I have to go back tomorrow. It is not very exciting or cheering to post about these kinds of stupid problems, but I guess the point is that just eating and attending class seems to take so much energy, and I'm probably not doing the best job of either.

I also don't have any friends. Recently, I have participated in activities suggested by my flatmates, like having a party, getting pizza for another flatmate's birthday, and watching a movie. I'm actually slightly impressed with myself because I feel like, although I might be the least social person in my flat, I do spend time with my flatmates and they think of me as a member of the flat. But the fact that I'm not a failure doesn't mean I'm a success. A really quick way of summing the situation up is that no one at this school knows I'm gay, which is something that anyone who was friends with me would know. I haven't had a conversation about anything even slightly important.

I hope things will get better, but I've been here for almost a month. I guess it's important to think about the fact that I am competent; I'm not starving or skipping class (much), and I'm not hated or ignored by the people I live with. But so far, I feel like the only benefit of being here is that I'll be able to hold it over my parents when they treat me like a four-year-old, which they usually do.

01 October, 2009

They just used the word "Mongoloid" on Glee. I'm going to keep watching this show because I'm a masochist, but I think it just showed how much of its ableism is calculated and how much is that the writers just don't understand that disabled people have feelings.

(For the record, Rachel is absolutely the worst Sally Bowles ever. I agree with Sandy. Couldn't they think of a better part for her to leave the club for?)

PICTURE NOTE: as a lot of us probably know, Photobucket has recently stopped allowing people to hotlink images. For the first few years I was using this blog, I used Photobucket to host most of the images, so now they will not be visible! Until Photobucket goes under, as I imagine it will, you can at least see the images by opening them in a new tab.